Rebounders Don New Colors
for Team Tyler And Leukemia Awareness
Photos Courtesy of Gloria Hong and Sharma Wright

Proud Grandparents. Top: Coach B's Parents, Bottom: Mark Thomas' Parents

It’s been a while since I’ve offered any updates on Tyler. On Friday (Feb. 4, 2011) he started a new phase of treatments, which will last about six to eight weeks. This phase is the 2nd most intense period he’ll endure during what we hope is his road to being permanently cured. The most intense phase was the first 29 days when his body was flooded with chemo, steroids and various drugs to wipe the Leukemia from his body.

This phase is similar, but the steroids will come in “pulses”- seven days on and seven days off. He’ll also get more spinal taps and other forms of chemo, making our trips to Hopkins more frequent. We’ll also have a nurse come by our house on various days to administer chemo.

All the drugs will weaken Tyler’s immune system and it is already noticeable that his energy level is down a bit. What this also means is the probability increases that Tyler gets sick with a fever, which requires us to take him to Johns Hopkins any time the fever reaches 100.4 or higher. Since I’ve last updated you back in November, I’ve probably made about five trips to Hopkins with Tyler because of fever.

Fevers typically don’t come at convenient times. They tend to spike at night. Fortunately, every time we’ve had to take Tyler in because of fever, he’s never had to be admitted as an in-patient. We have gotten home at hours like 5 a.m., 2 a.m. etc., but it sure beats staying in the hospital.

Now that we’ve entered this phase of treatment, it brings the finish line of high-intensity chemo treatments in sight. Once we get through this phase, Tyler’s blood counts will likely be low and we’ll require some time to build them back up before entering “Long Term Maintenance”. During “LTM”, Tyler should be on low intensity treatments for the duration of the remaining three years. And while that is motivational, there is still the day-to-day of administering the various meds and watching Tyler handle the side-effects.

As parents, we know that this is ultimately best for him and the only way to go, but it’s still a bit disconcerting to put these chemicals into our child’s body. On the first day, trying to give a liquid steroid called Dexamethasone, we got our first “taste” of what this phase will be like. Tyler threw up when we tried to give it to him. After smelling it, I understand why, because it has the scent of Isopropyl Rubbing Alcohol. I can only imagine what it tastes like. We tried again by mixing it with applesauce, and since then, I’ve asked our doctors to please give us the medicine in pill form. At least with pills, I can crush them and put them in the applesauce, which he handles much better.

So, big picture-wise, Tyler is still doing very well. He’s on the road to being cured. The only minor set-back we’ve experienced was when the start of this phase was delayed from this past Monday to Friday because Tyler’s blood counts weren’t sufficient. Specifically, his ANC (Absolute Neutrophil Count (ability to fight infection)) number was low, which we think was because he’d had a fever two days prior.

It will be a relief when this phase is over. Doctors have warned us that this phase can be rough for some patients, but it is impossible to predict how each will react. So, we’re hoping that Tyler handles each day like he has the rest- as our little hero who just wants to be a kid and have fun.

November 5, 2010

Tyler’s normal Wednesday appointment was pushed back to Friday this week and will continue on the next two Fridays. All of his numbers continue to look good.

Today he had another spinal tap procedure performed on him. For what’s a pretty invasive procedure (penetrating the spinal column to obtain fluid and administer chemotherapy) it is a remarkably quick process. Daddy and Tyler put our gowns on and we go into the operating room. Daddy holds Tyler while answering various questions from the medical team. Soon, the anesthesiologist connects to Tyler’s “port” on his chest and pumps a white liquid into the tube, which enters Tyler’s major arteries and quickly puts him to sleep.

This process or similar ones are done thousands of times a day across the country. In my head, I know that this is “routine” for the medical team and it isn’t even the first time for Tyler and daddy. Despite that, it is still a tad unsettling to watch this mysterious fluid enter your child’s system and render him unconscious in your arms.

Once Tyler goes to sleep, daddy leaves the room, removes his gown and shower cap and heads to the waiting room. In no more than 15-20 minutes, a member of the medical team comes out to tell us the procedure is finished and we can go to the post-operative area to wait for Tyler to wake up. It’s not much more than 5 minutes before Tyler’s eyes pop open. Those eyes opening are a great sight and for Tyler, the best part is that he can now eat again, after “fasting” since the night before.

Tyler is now starting a new round of medicine. The star of this segment is “Mercaptopurine”, which he’ll take once a day, at bedtime, on an empty stomach, for 28 days. It is another chemo drug that kills cells and will lower his white and red blood cells. It will also lower the number of platelets in his blood.

Losing red blood cells can make a person feel tired and weak. Losing white blood cells can make it easier for a person to get infections. And a low number of platelets can cause you to bruise more easily.

Other possible side effects include loss of appetite, nausea, diarrhea, sores in the mouth, an itchy rash, darkening of the skin, hair loss and decrease in sperm (I think Tyler’s safe on that one). The loss of appetite is interesting, because he rapidly gained weight during the previous cycle, courtesy of steroids. He was up to 40 pounds at the end of “Induction”. At today’s check-up, he weighed in at 35.6 pounds. It’s not surprising he’s lost so much weight, because his appetite went back to normal and his energy level has been high. He and brother Markus ran for two hours at the Comcast Center recently. I think he lost a pound or two alone on that day. As a result, his appearance is less bloated and he’s a bit easier to pick up. That should help mommy’s back, which she’s been getting physical therapy on for a few days.

Mommy’s back is feeling much better, thanks to the help of Mike McNerney and his clinic. Two days ago, mommy picked up Tyler for the first time in a week. Within seconds, Markus said to her “Mommy’s back not hurting?” It is amazing how fast young kids can connect the dots.

Another good piece of news is that because Tyler’s levels are good, we can let him eat more foods that might have previously been prohibited. Interestingly, that list included fresh berries, which couldn’t be guaranteed to be free of bacteria on their surface. Part of this news was delivered by Dr. Schaeffer, who we met for the first time today. He just happens to be a Duke grad and had to mention that to us. His “shadow”, though, a young lady who is med student, quickly interjected that she went to Maryland. To which I replied I’m glad Dr. Schaeffer is keeping good company.

We now have a scenario where our family pediatrician went to UNC, members of our pediatric oncology team went to Duke and the head of Hopkins’ Pediatric Oncology Department studied at West Point and has a niece who is a freshman at Boston College. It’s something to have fun with while talking to them. Of course we know that they’re all pros and terrific at what they do.

On the flip side, today I chatted with a parent in the playroom while were between stops. His daughter is 8 years old and also has Leukemia. Her name is Brooklyn. She was diagnosed with ALL (essentially the same thing as Tyler) as a two year old in 2004. Unfortunately, in 2008 she suffered a relapse. The chemo used to treat the relapse led to another side effect- AML- a more difficult kind of Leukemia. She required a bone marrow transplant and luckily they found a match. It looked like she might beat AML, but again suffered a relapse. Recently, the father said, doctors told the family that there’s not much more they can do for Brooklyn. The parents aren’t giving up and are now working with someone who does “all natural” treatment and claims to have cured some cases of AML.

Naturally, alarms went off in my head and I brought this scenario up to our attending physician, Dr. Ladle. He told me that it is a rare scenario that leads to this different kind of Leukemia sprouting up. He also added that because Tyler is now on a “less intense” path, that reduces the chances even further. But he also emphasized that chemo drugs “hit” the DNA in our cells and when that happens too many times, it can alter things and lead to something like a different kind of Leukemia or cancer.

That’s the kind of news that tempers our excitement over Tyler’s progress. Sure we’re still very happy and optimistic, but we also know that the road ahead is long and we can’t know what’s around every turn.

Mark

Today is exactly one month from the day that Tyler was diagnosed with Leukemia. As devastating as that day was for us, today is very uplifting. We received a great phone call from Dr. Brian Ladle this evening, telling us the results of tests that were done on Tyler yesterday at Johns Hopkins. After closely examining Tyler’s bone marrow blood, the Hopkins team can find no traces of Leukemia anywhere. Not even less than .1% of a trace. He is officially in remission.

So what does this mean for Tyler’s overall diagnosis? It means he is now officially in the lowest risk category across the board- all the way from the rest of his three years of treatments to the chances he’ll have a relapse. It also means that his future medicines will be less intense, with less side effects.

All that being said, it does not shorten the duration of treatment. The Hopkins team knows that if they stopped treating him now, Leukemia would surely come back. Those rogue, sleeper Leukemia cells that are hiding in his system would quickly multiply and take over.

Dr. Ladle also added that in looking at Tyler’s bone marrow blood there is all sorts of good cellular activity going on inside. His body is producing what it is supposed to. We got an idea of that at yesterday’s weekly visit to Hopkins, where Tyler had a spinal tap and bone marrow aspiration. His pre-procedures blood work showed his White Blood Cell count at 3.12, which is just off the low mark (3.90) of the normal range. His neutrophils were at 1100, a little below 1500-8500 normalcy. His Hemoglobin was at 9.5, which is just a shade below the 11.6 low end marker for normal. A week ago he was at 9.8 hemoglobin, but that number was helped by the blood transfusion he received a week prior. This score was also impressive because the blood transfusion he had to boost this number was two weeks ago. Those red blood cells are now dying off, so what showed up on this measurement came at least somewhat from Tyler producing his own red blood cells. And Tyler’s platelet count was 9.0, a hair shy of the 9.2 needed to reach normal.

Prior to getting these results, the big news at Tyler’s weekly visit yesterday actually wasn’t about Tyler. It was about mommy, who gave her team the day off so she could be there with Tyler for his procedures. About 15 minutes into our office visit, mommy was putting Tyler down and felt a “zing” in her back. Daddy heard a “pop”. Mommy’s back was in pain and she couldn’t stand up. So, daddy had two patients to take tend to.

Fortunately, Tyler’s procedures went smoothly and because his blood work numbers were good, we went home sooner than expected. Mommy has gotten treatment on her back from Mike McNerney and his Physical Therapist Clinic partner, Rick Violand. With their help, mommy is getting better.

Tyler is also feeling better, which is evidenced by him shooting hoops for the first time since his diagnosis a month ago. He also allowed daddy to stroll him around our neighborhood a few days ago, which he didn’t want to do any previous time since diagnosis.

We have received so many wonderful words of support from so many Rebounders. On behalf of our family, I say a thousand heartfelt thanks to all. We already knew how fortunate we were to have the support of such an amazing group of people, but this has taken it to an even higher level. As any parent surely knows, when another person goes out of their way to show kindness to your child, it touches your heart in a very special way.

Until now, I had always been one of those people who never knew exactly what the right words were to comfort someone affected by cancer. Now, we’ve learned that the exact words are the ones that express love and support. And that’s what we’ve received from so many Rebounders.

We are cautiously optimistic about Tyler’s prognosis. So far all the results have been “best-case-scenario” and we think he has a great chance to live a long and happy life. We’ve also learned that sometimes in life’s worst situations, you get to know some of life’s most amazing people.

Clearly there are a lot of wonderful people within the Rebounders. So many of the emails we’ve received tell touching and inspirational stories. It always helps to know what other people have overcome. Every life is so equally precious.

With that in mind, I’ve been paraphrasing one of our Maryland slogans when I think of our own battle. I think you’ll like it - “Cancer Fears Tyler”.

See you soon.

Warmest Regards,
Mark Thomas

Archive

• 11 Month Update
• Happy Halloween from Superwoman and her two Super Heroes
• 6 Month Photo Update
• A Message from Markus and Tyler